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Category Archives for Blue-Cone Monochromacy

Over the past nine years I have learned quite a bit about Achromatopsia and more importantly BCM (Blue-Cone Monochromacy), that is a given. One of the things that is always entertaining to learn, is how to adapt board games for the boys. The problem I have run into is, how do you adapt a game without interfering with the game itself and without somehow giving an advantage to those who do not have a visual impairment? Sequence is an awesome game in our household, as is Monopoly and Life. When it comes down to a game my oldest son and I can agree on, Sequence is the answer.

Lately, after me getting impatient and trying to “rush” my son to make his move, he once again, put me in my place. He let me know how hard it was for him to distinguish between the red and black cards on the board because of the glare overhead. The only way I could think to remedy it was to put a diagonal slash through each of the red cards on the board and also in the deck. Let me tell you, I felt horrible for rushing him, but I can’t tell you what frustration putting a little line on a card has saved the both of us! We also are talking about marking the blue coins on both sides with a white dot in the center, so that if someone else decides to ever play with us, he will be able to distinguish between those coins on the board easier too! We will keep you informed…

This boy can sleep an incredible amount. This surprises me because he always feels the need to have this blanket with him. I love it, but it is LOUD. When he was born, we knew that there was a 50/50 chance that he would have the same genetic condition, Blue Cone Monochromacy, that his older brother had, so when it was confirmed we took it as just another important piece of the puzzle of “him”. With BCM, his central visual acuity is roughly 20/80-20/200 at any given moment and he is colorblind. We have found that his colorblindness is not complete and that he can see slight amounts of yellow and red, though we don’t know in what amounts. My mother is brilliant when it comes to sewing and put together this baby blanket for him. It is black, white and yellow, with geometric patterns, dots, penguins, etc and verybusy. She made this blanket and a mobile for over his crib, how awesome is that?! It amazes me everyday the challenges we face and the things we learn. I constantly say that we are blessed that he was given this condition… it forces us to change and adapt accordingly. How he possibly adapts to sleeping with that beautiful, yet loud, blanket is beyond me…

So… Spyder had another low vision appointment this morning. Generally he’s right around 20/80 with drop to 20/200 (or more) in very bright light. Obviously there is nothing they can do about the colorblindness, so that will never change, BUT his condition is NOT degenerative! Stopping braille and possibly dropping down orientation and mobility. One set of regular glasses with transitions AND a darker grey or amber clip on. ALSO another set of new orange tinted glasses with bifocals for school and reading. AND SHE THINKS HE IS GOING TO BE ABLE TO DRIVE!!! She said she can’t promise, but she noticed he picks things up extremely fast, so with that and being able to control the light, he will probably be able to learn to use a telescopic piece to drive! I can’t contain myself!

Had another IEP for the Lemur King this morning… they were impressed how current he is with his skills despite his visual impairment. They were also impressed with his vocabulary, use of Sign and putting a few words together. They said I was doing a good job! I SO needed to hear that… Once a week Group and once a month with the Specialist! Woo hoo!!!

Day 39 of my 365 Days of Dreads. Almost done for the night… it’s been a very long night. About to crash. One more coat to the nails and I am done! Need to be up early and see if school is closed for the day with this snow that is coming down! Went to Spyder’s Cub Scouts meeting at Lightning Speedway in Livonia tonight. I got frustrated for Spyder, being put into another situation where color is of the importance. It was totally awesome! Slot car racing!!! The only issue was that they were color coded tracks and cars. For those boys not racing, they were “in charge” of standing on the outside of the track, catching the cars when they flipped and putting them back on their appropriate lane. The “dude”, yes, he was just that, some old dude, almost caught my foot “accidentally” up his… Oh, I mean, there was this surly gentleman working there that kept spouting unkind remarks at my son, who stood jumping with excitement at the end of the track, yet with his hands in his pockets the whole time. “You aren’t going to catch any of them with your hands in your pockets,” he would bark at my frustrated son. I tried to do my best at standing by Spyder’s side to direct him to the correct lane and such. I have to remember that people can’t see what makes things so darn difficult for him…

I was the only female there, other than the younger sister of one of the Scouts. It was kind of cool for one of the dads to hold the Lemur King so I could race a couple laps. The Lemur King was not having it. He was ready to go home and go to bed. I have to say… that is exactly where I am at.

This morning I had to take the Lemur King into Kellogg Eye Center at the University of Michigan. I have been dreading this appointment since before he was born. He was to see Dr. Heckenlively, the only Opthamologist in the state of Michigan to focus on Blue-Cone Monochromacy. Before being able to see Dr. Heckenlively, there were a couple of other things that we had to accomplish. Our appointment was for 9:30am, but we were not brought back to a room until almost 10:30am. When they to us back into the room they had to put three different kinds of drops in his eyes and he was not happy at all! Then we were directed to another room for Dark Adaptation. Here we sat, in complete darkness, for 45 minutes. Just as he was starting to fall asleep, two figures with red lights on their heads…

We were then redirected into another room for his ERG (Electoretinogram). There was a small table where the doctor directed me to put the sleepy king. As soon as I went to set him down he started to scream. She says, “Just lay him down and he might calm down. Some babies fall asleep during the procedure and have no idea what is going on. I thought, “Are you crazy? There is NO way that he is going to calm down.” I ask if it is going to hurt, she says, “No.” I ask if she needs him to be quiet during the procedure, she says, “No.” I then say, “He will just have to scream then, this needs to be done.” Thank goodness there was another nurse there to hold his head straight as I was laying over his legs and holding his hands in mine. I knew that I could not get upset, because he was already upset as it was. The nice doctor finally fitted him with these crazy “contact lenses” with electrodes off of them. See following picture to get an idea….

This was followed by many bright flashing lights, more screaming, lots of tears, then suddenly… a break. Not a welcomed break I might add. For in this break came a couple more drops, more screaming and a five minute wait, followed by more bright flashing lights. The process took a good half hour, but as soon as I picked him up, he quit crying and clung to me like a little monkey.

Instead of waiting for another hour for the doctor, I asked if we could go grab some lunch from the cafe. The King was so tired and hungry, I was not looking forward to the second half of the day. We got to the cafe where there were no highchairs and the soup was so horrible that even the King wouldn’t eat it! That is unheard of! The kid eats everything! We went back to check in, then waited for another hour and a half to see the doctor. When we finally got in his room, he spent a whole 7 minutes with us. He started off by saying, “You already know that he has it?” I said, “Yes, his older brother does also, as well as my birth father.” It was obvious that he was irritated when the King wouldn’t let him shine anymore lights in his eyes and referred us to a Pediatric Opthamologist. When I asked him if there was a possibility that we would be able to get Stem Cell injections in the future to help with his vision or colorblindness, I was told, “Well, he was born without those markers…” , as he looked at the other doctor in the room. I got the feeling that if money were no object, he might have a different answer for me. I am wondering if I had worn a beautiful long wig, if he might have had a little more to say?

I find it entertaining that the Lemur King is now pushing to take over his big brother’s chair…. We have learned that the boys need to be fairly close to the television in order for them to see it, with eyesight ranging from 20/50 to approximately 20/80. Finding the appropriate seating element has been quite the task to say the least. The television has to be low in order for them to see it, but then when they sit down, no one can see around their heads. Over the years I have tried those little foam couches, outdoor chairs, child sized rockers, etc. It seems that each of them has their downfall just as everything else. For the past year we have resorted to, “Spyder, can you move to the side please?”

Now there are two heads to see beyond! I am grateful that they can still see at all, please don’t get me wrong, it’s just that these little obstacles can seem like such a big deal sometimes. My body and heart use to be able to take these hurdles with much more grace. Now I just want to stomp my feet and pout. For now I will try to handle with as much grace as I can muster and let LK keep pushing his way into his brother’s seat. Let’s label it a “bonding experience”…